The Little Hearts that Beat: A story of a brave heart

In the heart of Agra, in the busy streets and by lanes a 16-year-old gets ready to go to school in his house. He is aiming to be the topper in his class and crack the annual school exams this year. As he leaves for school there is a spring in his steps, shine in his eyes and an excitement to go out and achieve.

But this was not the case a few months ago. Manas (Alias name) struggled to walk properly as he was constantly short of breath. Carrying on basic chores and getting past his daily routine seemed difficult for this young boy. Like most Indian children, playing cricket with the boys in his street was something he really enjoyed. But because he was constantly struggling to breathe, he could not run and participate in the game. The result? The other boys slowly started finding excuses to discourage him from playing with them as neither of the teams wanted him on their side.

What Lack of Resources Can Mean

Many children in India struggle to get timely access to a treatment for their congenital heart defect

Not aware that this was sign of heart disease in children, the worried parents initially thought that he was deprived of good nutritious food and hence did not have the energy and therefore not thriving. Then suddenly they realised that his nails were turning blue and that is when they started the cumbersome procedure for a lot of parents living in the remote parts of the country. They met with the local doctor, who sent them to another specialist a little further away from their village. Unsure and uncertain of what they were looking at, the family went to meet the doctor. A test done on Manas revealed that he had a defect in his heart. The defect in his heart, was interfering with all his activities – it was not the lack of nutrition nor the lack of strength that were impairing his ability to participate actively and do all the things his friends were doing. The parents were heart broke – having a defect in the heart of their son was terrifying and they did not know what lay ahead. Thankfully the doctor told them that there was a treatment available however, the intervention would cost a couple of lakhs.

The father a worker in a factory was devastated and did not have the courage to meet the eyes of his wife and son. How could he say that he could not organise the money to treat their child. Battling with a range of emotions he told the family that he will organise the funds and get his boy treated, but needed time. The family returned in the hope that soon the father will be able to organise the funds and get the treatment done. However, one year turned into another, and then another and almost 10 years passed. Manas went without any intervention. Through the years he struggled. He could no longer walk with his friends to school as he would get extremely tired. There was a car that was organised to take him to school. Even his attendance in school was scanty as with repeated chest infections he had to miss several days. With no access to a tutor or parents that could help him with the lessons he missed, he started lagging behind academically as well. While at school the other kids stopped playing with him. Manas would just sit and watch the kids with a heavy heart hoping that one day he too would be able to heal his heart and play and have fun. He often asked his father about when he would get him treated and each time the father would ask for time to organise the funds. His father was helpless.

Manas had a critical heart defect which required a surgery. Usually, such types of heart disease in children, are treated as soon as the baby is born but in Manas’ case the time was stretched.

This is a predicament that is the worst for any parent. Knowing that your child has a critical issue and knowing that there is a treatment available but not having the funds to get the treatment done is just horrible and unfair.

A Rainbow in the Clouds

Eventually when his blue discoloration became worse, they again went to a hospital in Delhi NCR. At that hospital the doctor told them that treatment was possible. The social worker at the hospital told them about Genesis Foundation an NGO that works to support the lesser privileged children get treated for their congenital heart defects. The Foundation raises the funds through corporate donations to charity and from individual donors. The father could not believe his ears and berated himself for not having found out about the Foundation earlier.

The boy was successfully treated and retuned home. Manas waited 10 years for an intervention – a harsh reality in many parts of the country.  2 years later when we spoke to the family about his progress there was perceptible happiness, hope and gratitude in all their voices. The boy so confidently said that he can now run and can now play cricket with his friends. Ravindra Jadeja from the Indian cricket team is his favourite player. His academic performance has also become better as his schooling is more regular and he is able to focus on his lessons.

When we asked him what he aspired to become when he grew up he said in the most transparent way “I have not thought about it yet.”

This is one of the many stories of children waiting for an opportunity to be treated, of waiting to be able to play and attend school. This should not be a privilege but a right for every child as #hardildhadaknachahe.

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